Development of audio-visual and interactive story board ...

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2018

Deanna Park – Flinders University

Community and public health

placement

16/04/2018 – 01/06/2018

Development of audio-visual and interactive story board nutrition

resources for early CKD Indigenous clients

http://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=2ahUKEwimwfCcneHaAhUBQpQKHcSODF4QjRx6BAgBEAU&url=http://tonywheeler.com.au/arnhem-land-aboriginal-art/&psig=AOvVaw3ngVWI9l6DFMhUvaossVem&ust=1525151225990156

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Contents

Executive summary ................................................................................................................................. 2

Background ............................................................................................................................................. 3

Needs assessment ................................................................................................................................... 3

Existing resources at NRU ................................................................................................................... 3

Existing resources from other organisations ...................................................................................... 5

Stakeholder analysis ............................................................................................................................... 7

Goals ....................................................................................................................................................... 7

Objectives and strategies ........................................................................................................................ 8

Methods ................................................................................................................................................ 10

Reciprocity ........................................................................................................................................ 11

Participatory action ........................................................................................................................... 11

Danila Dilba exercise group .............................................................................................................. 12

One off cook up at NRU .................................................................................................................... 12

Patients around NRU ........................................................................................................................ 13

Engagement with artist ..................................................................................................................... 13

Engagement with dietitians and other student dietitians ................................................................ 13

Engagement with other multi-disciplinary staff and stakeholders ................................................... 14

Communication strategy ................................................................................................................... 14

Rationale ............................................................................................................................................... 14

Ottawa charter .................................................................................................................................. 15

Primary Health Care principles ......................................................................................................... 15

Health promotion theories ............................................................................................................... 16

Results ................................................................................................................................................... 17

Evaluation strategy ............................................................................................................................... 18

Process evaluation ............................................................................................................................ 18

Impact evaluation ............................................................................................................................. 21

Discussion.............................................................................................................................................. 22

Recommendations ................................................................................................................................ 23

Conclusion ............................................................................................................................................. 24

References ............................................................................................................................................ 25

Appendices ............................................................................................................................................ 27

Appendix A: Danila Dilba session plans and resources provided ..................................................... 27

Appendix B: One off cook up at NRU supporting documentation .................................................... 39

Appendix C: Resource formatting checklist developed by Kraus and Rowe .................................... 45

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Appendix D: Participant input ........................................................................................................... 47

Appendix E: Piloting of resources around NRU (and impact evaluation) ......................................... 57

Executive summary

Chronic Kidney Disease (CKD) is widely spread amongst the Aboriginal and Torres Strait Islander

populations in Australia and is associated with a plethora of determinants. There is a high risk that

the condition may progress and eventually some people may require dialysis.

The aim of this project was to develop nutritional audio-visual and story board resources to promote

kidney-friendly food and lifestyle choices for Indigenous early CKD patients to prevent or delay the

need for dialysis.

Examination of the current resources found the vast majority were not suitable nor particularly

relevant for this patient group and hence new resources were created. A number of stakeholders

shaped and contributed to the resource development process, most notably chronic disease patients

at Danila Dilba and dialysis patients at Nightcliff Renal Unit (NRU). Input was also received from

other multi-disciplinary staff. Impact and process evaluations were carried out in various stages of

the project.

Core approaches and values of this project include reciprocity, participatory action and

communicating the results back to stakeholders to increase ownership. Ottawa charter, Primary

Health Care Principles and various health promotion theories were also considered throughout.

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Background

CKD effects Australian’s from all walks of life however it is especially widespread amongst Aboriginal

and Torres Strait Islander populations. One in four Aboriginal and Torres Strait Islanders will develop

kidney disease in their lifetime, are six times more likely to have treatment for kidney disease than

their non-Indigenous counter-parts and are diagnosed at a much earlier age (1, 2, 3). Due to the

high proportion of Indigenous residents in the Northern Territory CKD rates are particularly high

compared to other states in Australia (3).

There are many risk factors which can lead to and worsen CKD including uncontrolled diabetes, high

blood pressure and high body mass (2, 3). There are also other factors which can increase risk of

CKD development and progression that are specific to Indigenous populations (especially those in

the NT) such as low birthweight, increased number of childhood infections, low socio-economic

status, long periods of time before diagnosis, low access to treatment, food insecurity and living in

remote areas (2, 3). Many of these risk factors encompass and are affected by poor quality diets

high in processed foods and other unhealthy lifestyle choices.

Sixty-six percent of Indigenous Australians with CKD are considered to have stage 1 CKD (3). Many

patients may be at risk of progression of the condition and hence the likelihood of requiring dialysis

in the future increases. Care involving dialysis accounts for 46% of hospitalisations of Indigenous

people and is the most common reason for hospital admission (3).

Therefore the aim of this project was to develop nutrition resources for Indigenous patients with

early CKD to prevent or delay the need for dialysis treatment in the future. The resources

encompass education for healthy eating and lifestyle choices to reduce risk factors to slow the

progression of CKD.

Needs assessment

Existing resources at NRU

NRU currently has a large number of its own nutrition resources for CKD Indigenous patients

encompassing mainly late CKD and dialysis stages of the disease. There are three formats of

resources available including information brochures/handouts, audio-visual stories and activity

resources:

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The information brochure/handout resources are specifically for late stage CKD and dialysis

patients and are primarily focussed around CKD nutrition in regards to fluid balance,

phosphate intake, potassium intake, sodium intake and diabetes management.

The audio-visual story resources are aimed toward late CKD and dialysis patients and cover

the topics of sodium intake, fluid balance, potassium and phosphate intakes. They are

viewed by patients on a tablet and centre around a fictional story read aloud in English or

some Indigenous languages with accompanying pictures and a written story.

There are also a number of activity/story board resources for late CKD and dialysis patients

which use visual cards and posters to allow flexible delivery of education and facilitate

patient learning through activities

Currently NRU has limited nutrition resources aimed at patients with early CKD as most nutrition

resources are aimed at either late CKD or dialysis patients. Currently the ‘Diet & Kidney disease’

resource aimed at non-dialysis patients is more suited to late CKD patients as it contains information

about potassium which is irrelevant to early CKD. Specifically, NRU does not possess any of the

following resources:

Audio-visual story resources on the topic of reducing sodium in the diet to prevent or delay

the need for dialysis for early CKD Indigenous patients

Audio-visual story resources on the topic of diabetes management for diabetic Indigenous

early CKD patients to prevent or delay dialysis

Activity/story board resources which display all of the nutrition, lifestyle and behaviours

which can slow the progression of CKD for early CKD Indigenous patients and prevent or

delay dialysis

Audio-visual resource detailing the role of the kidneys to assist with explanation of the diet-

disease link for all stages of CKD for Indigenous patients

Therefore this project aimed to create resources to communicate these messages to Indigenous

patients with early CKD and fill a much needed gap in resource content.

From previous student projects it was found that patients had a greater understanding of and

affinity for resources at NRU which:

Were in the form of a story (4)

Provide options of foods which are safe for patients to eat instead of only mentioning the

foods that should not be eaten (4)

Portray suitable foods with green borders and green ticks (4)

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Portray unsuitable foods with red borders and red ticks (4)

Ensure that the resource contains many visuals (pictures, speech bubbles to indicate

characters talking, arrows etc.) (4)

Contain text in a large font so they can be read easily (4)

For audio-visual stories the pitch should be loud and the narration not too fast (4)

For audio-visual stories include a summary of information at the end of the story (5)

Consistent formatting throughout with grid lines clear (5)

For more information about previous resource evaluation at NRU please see appendix C.

Existing resources from other organisations

There are a number of resources for early CKD patients which provide dietary advice made by other

organisations. There are a wide variety of resources, some of which are aimed at Indigenous

populations and some of which are aimed at the general population. The strengths and weaknesses

of each resource has been listed below.

NEMO - Simple swaps to eat less sodium (salt)

This nutrition resource is used for CKD patients of all stages to help individuals reduce their sodium

intake (6). It portrays pictures of high sodium sources in the diet and alterative low sodium options

with minimal text thus providing many alternative food choices as well as allowing the resource to

be suitable for low literacy patients. The food items are labelled but not individually which may be

confusing for some people if they cannot identify what the picture is. This was a major drawback as

previous resource development evaluation and processes at NRU recommended ensuring that each

picture is labelled to minimise confusion among patients. There were no bush foods included so this

resource would not be totally relevant for many Indigenous people as bush tucker foods are an

important component of many people’s lives.

Baker IDI – High blood pressure and salt

This resource is used for hypertension patients as well as CKD patients of all stages to reduce sodium

intake (7). The benefits of this resource are that it explains how to select lower sodium products

using the nutrition information panel and green ticks and red colour coding are used to re-iterate

the message. The resource is not suitable for low literacy patients due to extensive text and is quite

crowded with minimal white space. Additionally, this resource is not specifically aimed at CKD

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patients so there is little focus on renal disease and associated outcomes if sodium intake is not

reduced.

Kidney Health Australia - How do my kidneys work?

This resource educates CKD patients about the roles of the kidneys and in turn this will help to

emphasize the importance of keeping the kidneys healthy (8). A positive of this resource is that it

features Indigenous artwork to help the target audience identify with the resource. The resource

uses pictures to explain the story however many require a written or verbal explanation so that the

message can be understood. There is minimal use of symbols (tick or cross) or colour (green or red)

to re-iterate the message so this may confuse some people. Additionally, some people may not

understand the ramifications of having sick kidneys (ie change diet, dialysis or fluid restriction) as

this is not mentioned in the resource.

Healthy living NT – Good foods for diabetes

This resource is used to educate people about diabetes and the outcomes that can occur if diabetes

is controlled with special mention about kidney disease and dialysis (9). One page shows the hand

size serves of vegetables, carbohydrates and protein that should be consumed in main meals.

Additionally, the spread of carbohydrate foods throughout the day was another illustration. These

illustrations aid in conveying the message of the resource but most require a written or verbal

explanation so it may be of limited use to illiterate patients which is a drawback. Another negative

of the resource is that complex words have been used in some areas ie ‘glucose’, ‘regularly’ and

‘starchy’ which some patients may not fully understand the meanings of.

As demonstrated, the current resources from other organisations on the topics of sodium, diabetes

and the roles of the kidneys have some benefits and positive aspects which were kept in mind during

the resource development process. However, in comparison with the key recommendations of

pervious resource evaluation at NRU these resources do have limitations which do not meet all of

the evaluation recommendations. For this reason, the suitability of the resources examined may be

decreased and thus these resources may not be entirely effective at conveying the messages

intended to Indigenous early CKD patients.

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Stakeholder analysis

Stakeholders Role Engagement strategies Date

Chronic disease patients at Danila Dilba exercise group

Players Face to face discussions with patients at weekly exercise group about resources. Provide informal nutrition education and other resources to reciprocate.

18/4/18, 2/5/18, 9/5/18, 16/5/18, 23/5/18

Patients at NRU (participants at cook-up and patients around NRU)

Players Face to face discussions with patients at one-off cook up and with patients around NRU. Provide food and information nutrition education to reciprocate cook-up participants.

27/4/18 22/5/18 23/5/18 24/5/18

Patients at NRU (did not participate at cook-up)

Players Advertisement of project in monthly newsletter notifying patients that if they would like to contribute see the dietitians

May 18

Dietitians at NRU Players Face to face discussions and emails about the resource s

Throughout entire project

Aboriginal Liaison Officer at NRU

Players Face to face discussions about resources

Artist Players Email and phone correspondence about the resources and resource artwork

Throughout entire project

Staff at Danila Dilba exercise group

Players Face to face discussions with staff at weekly exercise group about resources. Provide informal nutrition education and other resources to reciprocate.

18/4/18, 2/5/18, 9/5/18, 16/5/18, 23/5/18

CKD nurses Players Face to face discussions (CKD nurse at Wurli-Wurliinjang) and emails about the resources

Families and relatives of patients at NRU

Subjects - -

Families and relatives of patients at Danila Dilba

Subjects - -

Staff at NRU Bystanders - -

Goals

1. Develop educational resources for Indigenous patients with early CKD explaining

nutrition in a culturally inclusive manner by the end of a 7 week placement

2. Communicate the processes used in the development of resources and an overall

summary of the resources back to Danila Dilba, NRU and other stakeholders by the

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end of a 7 week placement

Objectives and strategies

1. Engage and consult with Indigenous chronic disease patients at six sessions of Danila Dilba exercise group

1.1 Prepare resources to show participants 1.2 Formulate questions about resources to ask participants 1.3 Record all suggestions about resources made by the patients straight after the

Danila Dilba exercise group has finished in Resource Development Journal

2. Engage and consult with Indigenous renal disease patients at a one-off cooking group held at NRU

2.1 Create and display posters around NRU to advertise cook up 2.2 Select recipe and compile shopping list 2.3 Ensure all required cooking equipment is available and assemble BBQ 2.4 Shop for ingredients 2.5 Create time plan/schedule for the day 2.6 Set up kitchen area outside 2.7 Pre-prepare some food ie cut up salad and cut up vegetables 2.8 Prepare resources to show patients 2.9 Record all suggestions about the project made by the patients straight after the

cooking group in the Resource Development Journal 2.10 If patients do not currently have any suggestions let them know that they can ring

or drop by if they wanted to add or suggest anything else

3. Engage and consult with Indigenous renal disease patients at NRU in waiting areas and on home haemodialysis

3.1 Prepare resources to show patients 3.2 Formulate questions to ask patients 3.3 Create impact evaluation questions to examine patient knowledge 3.4 Record all suggestions, improvements and impact evaluation quiz results into

Resource Development Journal

4. Incorporate ideas, feedback and thoughts of participants at Danila Dilba exercise group and patients at NRU into resource development

4.1 Gather pictures to match draft resource outline from artist website. Request additional pictures if necessary

4.2 Incorporate ideas generated by patients at Danila Dilba exercise session and patients at Nightcliff Renal Unit into draft of resources

4.3 Show the participants the updated resource drafts, ask for feedback and change some areas if feedback indicates

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5. Ensure the consultation process with Indigenous participants at Danila Dilba exercise group and at NRU is culturally sensitive and culturally inclusive

5.1 Review literature of Aboriginal culture and complete cultural awareness training (focusing specifically on traditional Aboriginal cultures in the Top End)

5.2 Interact with and observe people of different cultures and recognise the differences between cultures

5.3 Talk to people via informal discussions to get an idea of their perspectives 5.4 Watch other health care workers (including dietitians, social workers, aboriginal

health care workers, nurses etc) interacting with Indigenous people to observe their behaviours

5.5 Discuss culturally relevant and inclusive ways to present information in resources with ALO

6. Ensure the cultural, geographical and economic context of Indigenous patients in the Top End is considered throughout the resource development process

6.1 Read market basket survey to have an understanding of the availability, pricings and types of foods available in remote areas

6.2 Read ‘Mapping point-of-purchase influencers of food choice in Australian remote Indigenous communities’ by Julie Brimblecomb and Joanna Henryks to obtain knowledge of consumer patterns in Top End communities

6.3 Ask participants at Danila Dilba exercise class and patients at NRU if the recommendations are relevant to them culturally, geographically and economically. Incorporate suggestions into resource

6.4 Examine current renal resources at Nightcliff Renal unit, other visual resources and literature for successful resource development to ensure relevance and usability is maximised for Indigenous renal patients

6.5 Discuss culturally relevant and inclusive ways to present information in resources with ALO

7. Engage and consult with other dietitians, other multi-disciplinary staff and stakeholders to inform resource development

7.1 Emails and telephone correspondence with artist 7.2 Face to face and email correspondence with dietitians 7.3 Face to face discussions with ALO 7.4 Involvement of other NRU dietitians at cook up and Danila Dilba exercise group 7.5 Email and face to face discussions with CKD nurses

8. Ensure that the information contained within the resources will complement the current practice of nutritionists and staff engaging with Indigenous CKD patients

8.1 Review other CKD nutrition/diet resources at NRU and other primarily visual resources to guide development to compliment current practise

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8.2 Use the same images of foods contained in the existing NRU resources to ensure consistency

9. Demonstrate the ability to incorporate Ottawa Charter, Primary Health Care principles and health promotion theories into the resources for early Indigenous CKD patients

9.1 Review Public Health and Community Nutrition subject content 9.2 Review Ottawa charter, PHC principles and health promotion theories material 9.3 Review public health and community nutrition program proposal and

development from 2017 to guide report

10. Provide an appropriate written over view of the resources and the processes used in their development to Danila Dilba exercise group participants

10.1 Use Microsoft word or Microsoft publisher 10.2 Identify feedback given from each group using Resource Development Journal 10.3 Ensure writing is large and it includes some pictures

11. Provide an appropriate written over view of the resources and the processes used in their development to NT nutritionists and staff at NRU

11.1 Use Microsoft word or Microsoft publisher

12. Perform one oral report of the overall project to Indigenous renal patients at Danila Dilba exercise group

12.1 Write session outline 12.2 Write and rehearse script 12.3 Deliver presentation Wednesday week 7 (30/5/18)

13. Perform one oral report of the overall project to staff and other stakeholders at NRU

13.1 Write session outline 13.2 Write and rehearse script 13.3 Use Microsoft power point to make slideshow 13.4 Deliver presentation Friday week 7 (1/6/18)

Methods

The methods used to obtain feedback and input for the resources developed in this project involve

the approach of participatory action and emphasizing the value of reciprocity. Two main vehicles

including the chronic disease group at Danila Dilba and a one-off cook up at NRU were identified as

key events which could aid in the project progression. Additionally NRU patients waiting to receive

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dialysis or receiving dialysis were approached to pilot the resources and to give feedback. The

engagement of Indigenous CKD and chronic disease patients was the most influential aspect of the

resource development process however input was also obtained from NRU dietitians, an ALO, an

artist, other multi-disciplinary staff and other stakeholders which were important aspects of the

project.

Reciprocity

Reciprocity is ingrained as a core value in many Indigenous Australian kinship systems, communities

and societies. Reciprocity refers to the ways in which people share with one another and support

each other based on family or community obligations.

Although far removed from the kinship system and community level, the methods used to obtain

input for the resources aimed to emphasize reciprocity in order to align with participant values.

Reciprocity was demonstrated by giving the participants things for their time. For example at the

cook-up participants were given a free lunch and informal nutritional education in exchange for their

valued feedback on the resource. At the Danila Dilba exercise group participants were given an

information resource on CKD, healthy eating or a recipe and informal nutritional education in

exchange for their input on the resource. They also received a meal and exercise therapy as part of

the usual running of the group by the primary health service.

Participatory action

The approach of participatory action was adhered to throughout the course of this project.

Participatory action is a style of research which aims to increase power and input from those who

are going to be effected by the research thereby ensuring that the participant is an equal partner

with the researcher (10). Participatory action also focuses on taking action to drive changes or

improvements which leads to better patient outcomes overall (10).

By obtaining a large amount of input during the resource development phase from participants or

those who will benefit from the resources the power and influence of the participants was

increased. In turn this lead to the participants at NRU and chronic disease patients at Danila Dilba

becoming equal partners with the student in the resource development project and increased their

ownership over the project. Upon completion of the project, action will occur in which resources

will be used in nutritional education of early CKD patients. In the long term it is hoped that the

nutrition education learnt through the resource will slow the progression of the condition and

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reduce or delay the need for dialysis of these patients, thus leading to better patient outcomes

overall.

Danila Dilba exercise group

Danila Dilba holds an exercise group and an informal lunch at the Jingili Watergardens for Indigenous

chronic disease patients every Wednesday morning. The group is led by a physiotherapist who hosts

an exercise routine for participants. The overall aim of the exercise group is to encourage physical

activity and promote a healthy lifestyle whilst helping participants form support networks with other

Indigenous people in the same position.

The Danila Dilba exercise group was identified as being a key event to obtain input from Indigenous

patients with CKD and other chronic diseases for the resource development process. The group is

held once per week and thus regular attendance by a NRU dietitian or student allowed strong

rapport to form between student and participants. In turn this aided in obtaining honest input for

effective and culturally relevant resource development. The exercise group was attended on the

18th April, 2nd, 9th, 16th and 23rd of May. A print out about renal disease, a recipe or a healthy eating

resource was taken to each session to give to participants to demonstrate reciprocity for their input.

Conversation was made with participants about general topics and painting was occasionally

participated in to engage with participants which helped to foster the participant-student

relationship. There were also many opportunities for the student to ask the participants questions

to get feedback for various resources during the sessions. The resources were edited to reflect the

feedback obtained. Further information about session plans for the Danila Dilba group are detailed

in appendix A.

One off cook up at NRU

A cook-up was held at NRU at midday on the 27th April for dialysis patients. A week prior to the event

the cook-up was advertised using posters around NRU. Two recipes were chosen to be cooked: lamb

kebabs and couscous patties served with salad. Both recipes were obtained from The Renal Resource

Centre’s Dining In: delicious dialysis recipes and meals recipe book. The salad vegetables chosen were

all low in potassium. In the days leading up to the cook up a significant amount of time was spent

setting up equipment and obtaining ingredients. On the day, equipment was set up and a large

amount of preparation (ie cutting up vegetables) was done before the patients arrived.

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At the cook up the dietitian and the student took turns doing cooking and talking to patients about

the Get Less Salt, Pathways to Dialysis and What do the Kidneys do? resources. Feedback from

participants was documented and resources were edited to reflect this feedback. Further

information about the cook-up session plan, advertisement flyer, shopping list and recipes can be

found in appendix B.

Patients around NRU

During the later stages of the project it was identified that the resources should be piloted on NRU

patients to assess their effectiveness on the patient group they are targeted at via an impact

evaluation. At the same time NRU patients were also asked for feedback to improve the

effectiveness of the resources. Various patients waiting to receive dialysis as well as those already

on the machine in the home haemodialysis area were approached over the course of three days.

Patients were initially shown the Get Less Salt resource. Patients were also shown the What do the

Kidneys do resource and then the Get Less Salt - Salt Swaps resource after the original Get Less Salt

resource was modified. Results of the impact evaluation and participant feedback was recorded in

the Resource Development Journal and then the resources were modified accordingly.

Engagement with artist

Queensland-based artist John Austin volunteered to be the illustrator for this project. All artworks

were obtained either from the artist’s website or created to meet the needs of the project. John’s

input and ideas were also utilised during the resource development process. Correspondence

occurred when required in the form of emails and phone calls.

Engagement with dietitians and other student dietitians

The input and ideas from the dietitians at NRU were used to inform the resource development and

this was obtained via face to face discussions and occasional emails. The NRU dietitians also

attended a number of Danila Dilba sessions and the one-off cook up at NRU to assist in obtaining

participant feedback on the resources. Previous student dietitian projects also helped to inform the

resource development process. Specifically, the concepts within the Resource Formatting Checklist

developed by Krause and Rowe (5) were used to inform the resources developed in this project (see

appendix C).

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Engagement with other multi-disciplinary staff and stakeholders

The Aboriginal Liaison Officer at NRU was consulted throughout the resource development process

to ensure resources were culturally relevant and inclusive for the target group. A number of

improvements were made with the ALO’s input. Danila Dilba staff and medical students on

placement were also engaged during this project. This occurred during the Danila Dilba exercise

group where staff and medical students had the opportunities to inspect the resource and provide

feedback. A CKD nurse from Wurli-Wurliinjang also provided feedback for the project.

Communication strategy

An important aspect of this project was to communicate with stakeholders. Communication was

important as it re-enforced the importance and purpose of stakeholder feedback. Communication

with stakeholders was also carried out to convey the research findings and near final versions of

resources back to the people who helped to shape their development. In doing so the value of

reciprocity was demonstrated whilst increasing community awareness, involvement, ownership,

responsibility and capacity. The communication back to the stakeholders took the shape of a

newsletter for NRU patients, a presentation to the Danila Dilba exercise participants (appendix A), a

presentation to nurses at NRU and a presentation to some NT nutritionists.

NRU Newsletter

NRU publishes a newsletter for dialysis patients once every two months to keep them updated on

happenings around NRU, for entertainment purposes and to provide dietary education informally.

To convey information about the project and its purpose, an article about the cook up was included

in the May/June issue. This provided patients with information about the importance of their

feedback whilst increasing their ownership of the resource. The lamb kebab recipe was also

included to provide some nutritional information to patients.

Rationale

Throughout the project a number of theories and principles have been used to guide and inform the

process. These include concepts from the Ottawa charter, Primary Health Care principles and health

promotion theories which enable better outcomes to occur both within the resource development

process and long term effectiveness for positive patient outcomes.

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Ottawa charter

The Ottawa charter aims to give people control over their health to ensure that they can make

healthy choices and have positive health outcomes (11). Three components of the Ottawa charter

have been utilised in the development of the resources and the overall project which include

‘developing personal skills’, ‘strengthening community action’ and ‘re-orientating health services’.

Developing personal skills has occurred throughout this project and will also occur when the

resources are actually being used by health professionals to aid in educating patients. The

participants who were involved in the resource development process were continuously exposed to

nutrition education whilst they were giving their feedback, thus increasing their nutrition knowledge

and increasing their personal skills in this area. Additionally, because the resources are designed as

an educational tool they will therefore be successful at developing personal skills when viewed by

patients.

Strengthening community action has also occurred throughout this project. The resource

development process heavily relied on participation, input from and collaboration with Indigenous

members of the CKD and chronic disease communities. This ensured that the community had

significant ownership and control over the resources developed for their own people.

Re-orientating health services occurred during the resource development. Through engagement

with the Danila Dilba participants in the resource development process, the organisation has

demonstrated that it is focused not just on clinical and curative services but also on health

promotion for its patients. During the resource development process patients were incidentally

exposed to nutrition promotion practises and thus health promotion occurred. Strengthened links

with the Danila Dilba health service were also occurring throughout this engagement process.

Primary Health Care principles

The Primary Health Care principle of ‘using culturally and socially appropriate methods’ was integral

to the project and the process of developing resources (12). People of different cultures have

different ways of knowing and understanding the world around them due to differing experiences,

environmental and historical contexts which they are exposed to (12). Thus, the collaboration with

people of the target culture in the resource development process ensured that the resources were

understandable, effective and relatable for individuals of that culture.

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Health promotion theories

The Communication-Behaviour Change model was central in the development of effective resources

for early CKD patients. This model focuses on the quality and effectiveness of communication inputs

and outputs which can then change attitudes and behaviours of the target audience (13).

Communication inputs include the source, message, channel, receiver and destination; these were

selected purposely to ensure the message could be conveyed to the target audience effectively (13).

Within this project the source is government dietitians who provide credible information to patients.

The message is nutritional and lifestyle information for early CKD patients delivered by a narrator

who speaks in familiar and non-complex language to enable patients to be able to both relate and

understand the message being conveyed. The channel the message is conveyed through is visual

and audio-visual forms to enable people of low literacy and visual learners to understand the

concepts. The receiver encompasses all Indigenous early CKD patients who come from both remote

and non-remote areas; the ways in which the message is conveyed takes into account these

demographics. The destination of the message includes changed attitudes toward nutrition for early

CKD, acquirement of new knowledge and the ability, confidence and desire to act on the knowledge

received.

The Health Belief model was also taken into consideration in the resource development process.

This model is based on the beliefs an individual may have and their effect on the individual’s

probability of taking action against certain health issues (13). Individuals are likely to make positive

behaviour changes if they:

Feel that they are at risk of developing the health issue

Feel that the health issue would have severe outcomes

Feel they have the ability to take action to reduce the risk or severity of the health issue

Feel the benefits of action they could take would be greater than the costs or barriers of

taking the action (13)

In this project most of the constructs of belief were taken into account when developing the

resources in order to increase the probability of patients making the positive behaviour changes.

Throughout the resources, dialysis and leaving family, country and community were focused upon to

emphasize the severe outcomes which could occur with progression of CKD. The focus on

alternative healthy food choices for early CKD patients was also emphasized throughout the

resources to ensure patients feel they have the ability to make positive behaviour changes. Through

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focusing on dialysis and presenting options to enable behaviour change the benefits of action

outweighing the drawbacks of costs and barriers is emphasized to patients.

Results

Through attending the Danila Dilba exercise group, having the one-off cook up at NRU and

approaching patients around NRU a large variety of feedback from CKD and chronic disease patients

was obtained. It was apparent that people were quite engaged when nutrition information was

conveyed through story telling accompanied by visual representations of the story. People related

well to clear and colourful pictures as well as symbolisms such as good blood sugars represented by

a calm river. Other symbols used to convey the message include certain colours, ticks and crosses to

indicate good/healthy and bad/unhealthy options which were well liked by participants. These

aspects are all consistent with the previous resource evaluation recommendations undertaken at

NRU.

Feedback also indicated that focusing on relevant themes of Indigenous life such as involvement

with family and community and fulfilling obligations were important aspects to allow the key

messages to be conveyed effectively. Additionally, the inclusion of relevant foods (including bush

foods) eaten by Indigenous people and relevant activities (fishing, hunting, gathering) were deemed

important to allow people to relate to the information and apply it in their own lives. Furthermore,

information about the benefits of bush foods were enthusiastically received by many of the

participants.

A number of participants stated that focusing on what they can eat rather that what should not be

eaten was an important component in a successful resource and this is consistent with the previous

evaluation recommendations. This was facilitated by including many alternative suitable foods and a

smaller number of unsuitable foods throughout each resource, thus taking the focus away from the

negative aspects of making dietary changes.

Input from participants indicated that displaying their involvement and ownership over the

resources was important to them. This was reciprocated by including patient artwork in the

resource and displaying the names of the groups within the resource.

Participants recommended that explaining the reasons why it was important to make diet and

lifestyle modifications was important in order to motivate people to make these changes. Initially

some of the resources poorly addressed this topic however modifications were made to ensure that

18

every resource contained some information about the reasons for change. Most of the resources

did this by emphasizing that dialysis would be the end result if action was not taken. The What do

the Kidneys do? resource aims to explain the importance of maintaining kidney health by focusing on

the roles of the kidneys within the body in greater detail. This also aids in the explanation of the

diet-disease link to patients.

According to patients, summary pages at the end of each resource are useful to re-iterate the

information covered and cement the understanding of the key concepts. Summary pages were

included in the Get Less Salt - Salt swaps, Get Less Salt - Label reading, Story about foods that make

blood sugars high and the What do the Kidneys do? resources.

Lastly, feedback indicated that resources should contain clear images and formatting consistent and

neat to minimise confusion and increase patient understanding. This again is consistent with the

recommendations provided by previous resource evaluations at NRU. Further participant feedback

can be found in appendix D.

Evaluation strategy

Process evaluation For each interaction with patients the processes used to obtain feedback for the resource

development were evaluated for success. Unsuccessful processes were contemplated and changes

were made in future to ensure all processes were effective. In general, all interactions with patients

provided useful feedback to inform the resource development. Successful and unsuccessful

processes as well as improvements to inform practice are listed in the following tables.

Danila Dilba session 18/04/2018

Positive aspects Negative aspects Improvements

Good rapport built with a number of people

Did not prepare a list of questions before attending session

Prepare questions and session outline before attending next group

Limited discussions about resources

Take initiative to steer conversation toward relevant topics (resource)

Student lacking confidence to guide the conversation

Changes to resource include provide alternative foods section, include relevant foods and inclusion of roles of the kidneys

19

One off cook up at NRU 27/04/2018


Patients enjoyed lamb kebabs and many people requested to take copies of the recipe home

Cous cous ingredient was not familiar to patients

Ensure recipes contain familiar ingredients

Patients were quite engaged before food was ready

Underestimated the amount of time it would take to prepare food

Be realistic about time taken to prepare some recipes

Some patients were happy to stay around after they had eaten to give us more feedback

Some patients reluctant to contribute to conversation due to not being familiar with others and facilitators

Invite groups of patients who are familiar with one another to increase confidence to contribute

Outside setting was appropriate for this group

Patients disengaged when food was ready

Changes to resources include changes to wording, remove confusing sections and inclusion of relevant foods



Continued to strengthen rapport with people already known

Conversations went off topic often

Continue to take initiative to steer conversation toward relevant topics (ie resource)

Established rapport with people who were not there last time

People not interested in ‘Nutrition and Kidney disease’ reciprocity resource – too wordy and not relevant to participants without CKD

Bring resources for people to take home which can apply to everyone and do not contain too many words

Pre-prepared list of questions to ask

Was not able to ask as many questions as required

Changes to resource include formatting revisions, minor revisions to story line and clearer explanations



Continued to strengthen rapport with people already known

Conversations went off topic often


Established rapport with people who were not there last time

Forgot to bring a copy of a reciprocity resource to give to patients

Remember to bring a resource to give to participants in thanks for their input

20

Received input from other health professionals (medical student and outreach worker)

Difficulty in explaining the Pathways to dialysis resource and lack of patient interest in this resource

Clarify way to explain Pathways to dialysis resource with placement educator and artist

Changes to resource include having a larger focus on dialysis throughout resources and some formatting changes among others



Good balance between general conversation and conversation discussing resources

Difficulty in explaining the Pathways to dialysis resource due to wind blowing away cards

Bring blue tack or laminate cards next time to prevent them blowing away in the wind

Received a very positive response on reciprocity resource brought along (recipe)

Bring another recipe next week to give to participants. Ensure that it is suitable for diabetes and renal patients

Involvement of participants with lower literacy levels to inform resource development

Changes to resource include some changes to wording, more detailed explanation of kidney role and people liked the lightbulb analogy


What went well What didn’t go well Improvements

Patients around NRU 22/05/2018


Patients engaged in resource well

One person could not see properly because she did not have her glasses – impacted on ability to provide feedback

Bring magnifying sheet in case people do not have their glasses

Patient attention was good due to wearing head phones

Resource too hard to understand so some people were confused

Able to strengthen rapport already built with one patient and established rapport with others

21

Rapport continually built with patients

Patients distracted by outside influences

Bring headphones to minimise patient distraction

Patients talkative Patients talking about unrelated topics often


Arrangements for final presentation made



Able to strengthen rapport already built with one patient and established rapport with others

Hard to show multiple people the resource at one time and hard to obtain and record input from multiple people at once

Bring speakers so that multiple people can view resource at one time (or show each person individually)

Patients were highly engaged and enthusiastic about giving feedback

One person was able to look at the resource but then had to go for dialysis so less feedback was received



Able to establish rapport with patients

Underestimated time it would take to set up home haemo machine – kept making trips to and from room before patient was ready to talk

Patients were highly engaged and enthusiastic about giving feedback

Showed each patient separately which increased their attention and the feedback received

Impact evaluation Impact evaluation was carried out in the later stages of the project to evaluate the effectiveness of

the Get Less Salt and What do the kidneys do? resources. Initial impact evaluation indicated that the

original Get Less Salt resource was not well understood by participants due to the complexity of the

nutrition information panel label reading content. This stimulated the original to be split into two

separate resources of Get Less Salt – Salt Swaps and Get Less Salt – Label Reading. What do the

22

kidneys do? was well received and understood by patients during impact evaluation. Further details

on the impact evaluation can be found in appendix E.

Discussion

The one-off cook up at NRU was highly successful in obtaining patient feedback for the resource

development. Most participants were interested in discussing the resources so a large amount of

feedback was obtained. There were some logistical issues as when the food was served patient

focus shifted to the food so they were less interested in talking further about the resources.

Patients appeared to enjoy the meal and many people requested to take a copy of the recipes home

which was facilitated. After the patients had finished their lunch, more discussions about the

resource occurred with some patients who stayed a little longer which was highly beneficial.

The involvement of the Indigenous CKD and chronic disease communities was highly successful in

informing the resource development process. At the Danila Dilba group it was apparent that some

participants were extremely confident and interested in talking about the resources and others not

so much. There was a correlation with moderate to high literacy levels and willingness to talk about

the resources. Whenever possible, people with lower literacy levels were involved in the feedback

process by reading the resources aloud or providing a narrated version in order to obtain their

feedback. Their feedback was especially relevant as the resources are aimed to be inclusive and

easily understood by all Indigenous populations including those with lower than average literacy

levels who incidentally make up a large proportion of the Indigenous CKD cohort. However on the

whole, most feedback obtained at the Danila Dilba group was obtained from participants with likely

moderate to high literacy levels.

Due to there being an abundance of feedback and piloting of the resources on participants with a

likely moderate to higher literacy level and a variety of other conditions at the Danila Dilba exercise

group it was identified that feedback from participants within the specific target group (Indigenous

renal patients of varying health literacy levels) was lacking. Upon this realisation an effort to obtain

feedback and test the resource amongst patients at NRU occurred. This was an extremely important

component of the project as it identified that the original Get Less Salt story was too complex as

participants were unable to answer impact evaluation questions correctly and understand key

concepts. This resulted in the Get Less Salt story being divided into two sections: Get Less Salt - Salt

Swaps and Get Less Salt - Label reading. Get Less Salt – Salt Swaps was intended to be a general

nutrition information resource to reduce sodium intake which is aimed at the lower literacy and

23

lower health literacy patients. For those with higher literacy and higher health literacy, Get Less Salt

– Salt Swaps would be used for initial education to reduce sodium intake with patients progressing

to the Get Less Salt - Label reading story to provide more in-depth nutrition education on label

reading.

Two way learning occurred at both the Danila Dilba group and with patients at NRU. Through

providing their ideas and opinions, the participants were teaching the student better ways in which

to convey the message through the resources. In turn, the student was able to impart nutritional

knowledge on the participants when they looked through the resources. Participants were also

provided with food (at the one off cook up at NRU) or resources and recipes (at the Danila Dilba

group). The provision of healthy recipes was extremely popular at the Danila Dilba group as it gave

people practical suggestions as to how to improve their health, increased their confidence in their

ability to make healthy food choices and focused on what they could eat rather than what they were

missing out on.

Recommendations

Currently the stories and activity created during this project are not fully finalised. The Get Less Salt

– Salt Swaps and What do the kidneys do? have been well piloted and subjected to an impact

evaluation. Piloting occurred both with the Danila Dilba group participants and with patients at

NRU. The impact evaluation occurred at NRU after patients had viewed the stories. For these

resources, finalisation should be undertaken after the artworks have been decided and any

formatting changes have occurred.

The Get Less Salt – Label Reading, Story about foods that make blood sugars high and Pathways to

dialysis resources were piloted at the Danila Dilba group but have so far had limited piloting with

patients at NRU and other renal patients. No impact evaluation has occurred. In future, the Get Less

Salt – Label Reading, Story about foods that make blood sugars high and Pathways to dialysis should

be piloted amongst renal patients and an impact evaluation should be carried out to assess their

effectiveness. Additionally, some changes to the artwork and formatting are required for these

resources.

The stories have all been narrated in English by the student. In future, the stories should be

narrated in English by an Indigenous person to increase ownership and relevance to patients. The

stories should also be narrated in Aboriginal languages to give patients the option to view the

resource in their preferred language. Consultation with NGO Panuku has already commenced who

will assist with recruitment of patient preceptors to narrate the translated versions. Tiwi, Yolngu

24

(Martha or Dhuwa) and Walpiri are the languages recommended to translate the stories into. Other

languages with potential to translate the stories into include Kriol and some other languages from

various regions of the NT to enable people from all over the Territory to listen to the stories in their

preferred language.

Once finalised, the stories and the activity should be used by CKD nurses, dietitians, doctors and

Aboriginal health workers during the renal patient education process in both individual

appointments as well as in group settings. Furthermore, the resources could also be used as a

health promotion tool for general audiences. Additionally, the stories could be displayed on

televisions and tablets in waiting rooms in health clinics throughout the NT. Another suggestion to

spread the message far and wide would be to put the narration of stories on aboriginal radio

stations to reach a wide and heterogeneous audience of all ages. The stories and activity also have

the potential to be used in schools especially due to the fact that the main character in the Salt

stories is a middle-school aged girl. Finally, The resources and this report will be displayed on the

artists website to enable health professionals throughout Australia to access the content.

Conclusion

Throughout this project a number of resources were created for early stage CKD Indigenous patients

to provide nutrition and lifestyle choice education via culturally appropriate methods. It is hoped

that the resources will either prevent or delay the need for dialysis for these patients.

NRU patients and other Indigenous people with chronic diseases at Danila Dilba were engaged

throughout the resource development process to inform the resource creations. Other multi-

disciplinary staff and stakeholders were also approached throughout to shape the resources.

Some of the resources are close to finalisation whereas others require further piloting and impact

evaluation. When the resources are finalized, it is hoped that dietitians, doctors, CKD nurses and

Aboriginal health workers will be able to use them to aid in the education of newly-diagnosed early

stage Indigenous CKD patients.

25

References

1. Kidney Health Australia. Kidney disease fact sheets [Internet]. Kidney Health Australia; n.d

[updated n.d; cited 2018 April 27th]. Available from: http://kidney.org.au/your-

kidneys/support/indigenous-resources/kidney-disease-fact-sheets

2. Claes J, Ellie J-AL, Rettie F, Butcher B, Bradley J. Are C-reactive protein and ferritin levels

being overlooked in Indigenous Australians with chronic kidney disease? J of Renal Care

[Internet]. 2013 June [cited 2018 April 27th]; vol 39 (3): Pp. 176-81. Available from: Wiley

Online Library

3. Australian Health Ministers Advisory council. Aboriginal and Torres Strait Islander Health

Performance Framework 2017 Report [Internet]. Canberra: Australian Government; 2017

[cited 2018 April 27th]. 275 p. Available from: https://www.pmc.gov.au/sites/default/files/

publications/2017-health-performance-framework-report_1.pdf

4. Lee XP. Development of education resources for dialysis patients at Nightcliff Renal Unit

using participatory action. Darwin, Australia; Flinders University; 2015, 39 p.

5. Krause B & Rowe C. Evaluation of Nutrition resources. Darwin, Australia; University of

Canberra; 2017, 36 p.

6. Department of Health. Simple swaps to eat less sodium (salt). Queensland, Australia:

Queensland Government; Feb 2018. Available from:

https://www.health.qld.gov.au/__data/assets/pdf_file/0015/150360/renal_saltpic.pdf

7. Baker Heart and Diabetes Institute. High blood pressure and salt. Victoria, Australia: Baker

Heart and Diabetes Institute, 2017. Pp 2. Available from: https://www.baker.edu.au/-

/media/Documents/fact-sheets/Baker-Institute-factsheet-high-blood-pressure-and-

salt.ashx?la=en

8. Kidney Health Australia. How do my kidneys work? Australia: Kidney Health Australia; n.d.

Available from: http://kidney.org.au/cms_uploads/docs/how-do-my-kidneys-work-new.pdf

9. Healthy Living NT. Good Foods for Diabetes. Northern Territory, Australia: Northern

Territory Government; 2010. Pp 15

10. Rosier K. Participatory action research [Internet]. Australian Government Australian Institute

of family studies; 2015 [updated 2015; cited 2018 May 7th]. Available from:

https://aifs.gov.au/cfca/publications/participatory-action-research

11. World Health Organisation. The Ottawa Charter for Health Promotion [Internet]. World

Health Organisation; 1986 [updated n.d; cited 2018 May 2nd]. Available from:

http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index1.html

http://kidney.org.au/your-kidneys/support/indigenous-resources/kidney-disease-fact-sheets

http://kidney.org.au/your-kidneys/support/indigenous-resources/kidney-disease-fact-sheets

https://www.pmc.gov.au/sites/default/files/publications/2017-health-performance-framework-report_1.pdf

https://www.pmc.gov.au/sites/default/files/publications/2017-health-performance-framework-report_1.pdf

https://www.health.qld.gov.au/__data/assets/pdf_file/0015/150360/renal_saltpic.pdf

https://www.baker.edu.au/-/media/Documents/fact-sheets/Baker-Institute-factsheet-high-blood-pressure-and-salt.ashx?la=en



http://kidney.org.au/cms_uploads/docs/how-do-my-kidneys-work-new.pdf

https://aifs.gov.au/cfca/publications/participatory-action-research

http://www.who.int/healthpromotion/conferences/previous/ottawa/en/index1.html

26

12. Talbot L & Verrinder G. Promoting health: the primary health care approach. 5th ed. NSW,

Australia: Elsevier Australia; 2014. 372 p.

13. Nutbeam D, Harris E & Wise M. Theory in a nutshell: a practical guide to health promotion

theories. 3rd ed. NSW, Australia: McGraw Hill Medical; 2014. 81 p.

27

Appendices

Appendix A: Danila Dilba session plans and resources provided

Session 18/04/2018

Resources taken along

Pathways to Dialysis, Get Less Salt, Story about foods that make blood sugars high

Outline: 10.00am Arrive

10.05am Introductions to Danila Dilba staff

10.10am Introductions to patients

10.15am Dee getting to know participants and Millie asking questions about resources

11.00am Painting activity

11.30am Lunch is served

12.00pm Last minute questions

Resource provided:

‘Eat Good Food to be Healthy and Strong’ from The Aboriginal and Torres Strait Islander Guide to Healthy Eating

Questions: None recorded

30

Session 02/05/2018


Get Less Salt, Pathways to dialysis, Story about foods that make blood sugars high


10.05am Touch base with Danila Dilba staff

10.10am Touch base with patients

10.15am Patients go on walk

10.30am Conversations with patients about general topics and resources where appropriate

11.00am Exercise activity with physio



Resource provided:

‘Nutrition and Kidney disease’ by Kidney Health Australia

Questions: Get Less Salt: 1. What do you think of this resource? 2. What brands of tomato sauce do you know? 3. What brands of bread do you know? 4. What do you think about having another page where we should more

food suggestions that are low in salt? 5. Is the Billy goat plum a suitable food to include for plant foods to eat? Or

should we use something else 6. What do you think about the red and green borders? Are the borders on

the correct side of the page or should they be swapped? 7. What message do you think the story is trying to tell? Is this the best way

to give this message? 8. What is one thing you like about it? 9. What is one thing you don’t like about it? 10. What do you think of Rita’s family? Do you think the father should be

there in the picture? Should we add more siblings? Should we add more pets?

Pathways to dialysis:

1. What do you think of the fast and slow track to dialysis resource? 2. What do you think the main message is here? 3. Does it make sense?

Story about foods that make blood sugar high:

1. What do you think is the message this story is trying to tell? 2. What do you think about this resource? 3. Should we add sugar to page 6? 4. What could we change about this resource? 5. Any other sugar foods we can add? 6. What cereals do you like? 7. What fruit do you like? 8. What flavour cordial do you or your family like? 9. What do you think page 16 is trying to tell people?

34

Session 09/05/2018


Get Less Salt, Pathways to dialysis, Story about foods that make blood sugars high, What do the kidneys do?









Resource provided:

None

Questions: Get Less Salt: 1. Is the billy goat/Kakadu plum a suitable bush food? 2. What do you think of the resource?

Pathways to dialysis:

1. What do you think about this resource? 2. What do you think the main message is here? 3. Does it make sense? 4. What do you like best about it? 5. What don’t you like about it? 6. What do you think about the explanations and statistics on the back of the

cards? 7. Is the bush plant food suitable? 8. Does the good blood sugars and bad blood sugars cards make sense?

Story about foods that make blood sugars high:

1. What do you think about the page with the bread spread over the day (with the sun)?

2. What do you think about the size of the fist page? 3. What do you think about the pages with pick one? 4. Is sweet potato a good one to use? 5. Do you drink poppas or do you drink juice from bottles?

Jobs of the kidneys:

1. What do you think about this resource? 2. What do you think the message we are trying to tell is? 3. Does it make sense? 4. What do you like the best about it? 5. What don’t you like about it? 6. What message does the fluid page tell you?

35

Session 16/05/2018


Pathways to dialysis, Work of the Kidneys video, Lightbulb vs. wrinkled kidneys, What do the kidneys do?









Resource provided:

Lamb kebabs recipe

Questions: Pathways to dialysis: 1. What do you think about this resource? 2. What do you think the main message is here? 3. Does it make sense? 4. What do you like best about it? 5. What don’t you like about it? 6. Does the good blood sugars and bad blood sugars cards make sense? 7. Did you learn anything new from this activity?

Work of the kidneys video:

1. Was the information easy to understand? 2. Did the video go for the right amount of time (duration)? 3. Were you able to learn something new from the video? 4. Did you have any questions that the video didn’t answer? 5. Would you like to say anything else about the video?

Lightbulb vs wrinkled kidneys:

1. Which one do you like better? 2. Which ones do you think better represent kidney health getting worse? 3. Which ones are easier to understand?

Jobs of the kidneys paper resource:

1. What do you think about this resource?

2. What is the message the resource is trying to tell us?

3. What do you like about it?

4. What don’t you like about it?

5. What do you think about the cleaning section?

6. What do you think about the getting rid of fluid section?

7. Did you learn anything new from this?

36

Lamb Kebabs

Ingredients:

1.2 kg lean lamb

2 green capsicums

2 red capsicums

2 red onions

1 tablespoon wholegrain mustard

1 tablespoon mint jelly

1 tablespoon reduced salt soy sauce

1 tablespoon olive oil Method: 1. Soak 16 long bamboo skewers in water for 30 minutes before using. 2. Cut up lamb, green capsicum, red capsicum and onion into 2 cm squares. 3. Thread lamb cubes, capsicum and onion onto skewers and place in a large flat dish. 3. Mix mustard, mint jelly, soy sauce and oil together. Pour over skewers. 4. Heat barbecue or grill. Cook kebabs for 5 – 10 minutes and brush regularly with marinade.

http://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=2ahUKEwjOtqSzgNfaAhWJWLwKHWFmAmAQjRx6BAgAEAU&url=http://www.myrecipes.com/recipe/lamb-kebabs-with-roasted-peppers&psig=AOvVaw00iV-6yCjcMFvpPns96ZfE&ust=1524799808472259

37

Session 23/05/2018


What do the Kidneys do?


10.05am Introductions to Danila Dilba staff

10.10am Introductions to patients






Resource provided:

No resource provided as did not intend to stay for a long time

Questions: None prepared as did not intend to stay for a long time

38

Session 30/05/2018


Get Less Salt – Salt Swaps, Get Less Salt – Label Reading, What do the Kidneys do? Pathways to dialysis

Outline: 9.45am Arrive and set up equipment

10.00am Presentation - Introduction

10.01am Presentation – Introduction about project, aims and rationale

10.04am Presentation – Feedback

10.10am Presentation - Results

10.13am Presentation - Conclusion

10.15am Presentation – Questions and talking to people

10.30am Patients go on walk, say goodbye and thankyou then we leave

Resource provided:

Communicated participant input back to participants

Target group: Danila Dilba exercise group participants (Indigenous people, males and females but

predominantly females, aged 45-80 years of age)

Social, cultural and literacy needs of target group: Cultural needs: Indigenous people. Literacy

needs: varying levels of literacy from no formal schooling to university educated. Some cannot read

but many have good literacy skills, some have English as a first, second or third language.

Objectives and strategies:

14. Communicate participant feedback and its impact and integration into the resources back to the participants via an oral presentation Wednesday week 7

1.1 Define target group, social/cultural/literacy needs of target group, define objectives and strategies

1.2 Write session outline

1.3 Write and rehearse script

1.4 Prepare booklets for audience to visually indicate the feedback received

1.5 Prepare laptop computer and sound system

15. Communicate participant feedback and its impact and integration into resources back to participants via written pamphlet Wednesday week 7

2.1 Prepare pamphlet print out for participants

2.2 Print pamphlets and bring to session

Resources: Car, Laptop computer, headphones, sanitary wipes, trestle table, blue tack (for cards and pathways resource)

Costing: No costing

39

Appendix B: One off cook up at NRU supporting documentation

Time plan and session outline for cooking group: Lamb kebabs and couscous patties

Tuesday 24th April:

Set up barbeque

Thursday 26th April:

Print out 4 x copies of the get no salt resource (in colour) and 1 copy of the Pathways to

Dialysis resource to show participants – 1 for Millie, 1 for Dee and 2 to put on table with

notepad in case people wanted to write down their ideas or look at it privately

Write recipes out in large font, add pictures to explain each step and print out 2 copies of

each recipe. Laminate so they can be stuck to tables at different stations and will not get

damaged

Food shopping for ingredients

Brainstorm questions to ask participants about resource

Friday 27th April:

Time: Activity:

8.30am-12pm Set up area outside (equipment, cooking utensils, tables, chairs, recipe and resource placement)

Prep some food items (ie cut up salad, cut up vegetables, cut up meat)

12-1pm Welcome participants and talk about the cooking group: > Explain what we will be cooking today > Recipe at each station > Explain the different stations (ie BBQ area for cooking, prep area for lamb kebabs, prep area for couscous patties and table with example resource for their feedback) > Explain that we will be going around asking questions and getting feedback for the resources to keep kidneys healthy

Ask them which station they would like to help out with

Time to prep and cook lunch

If participants have finished their part and are sitting down one person can go and talk to them about the resources; take notes.

1pm-2pm Time to eat

Chat about resource over food

Write down participant thoughts as we go

2-2.30pm Our lunch time

2.30-3pm Pack up area

3-3.30pm Write down patient thoughts in resource development journal

41

Layout of area

42

Lamb Kebabs

Ingredients:

1.2 kg lean lamb

2 green capsicums

2 red capsicums

2 red onions

1 tablespoon wholegrain mustard

1 tablespoon mint jelly

1 tablespoon reduced salt soy sauce

1 tablespoon olive oil Method: 1. Soak 16 long bamboo skewers in water for 30 minutes before using. 2. Cut up lamb, green capsicum, red capsicum and onion into 2 cm squares. 3. Thread lamb cubes, capsicum and onion onto skewers and place in a large flat dish. 3. Mix mustard, mint jelly, soy sauce and oil together. Pour over skewers. 4. Heat barbecue or grill. Cook kebabs for 5 – 10 minutes and brush regularly with marinade.

http://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=2ahUKEwjOtqSzgNfaAhWJWLwKHWFmAmAQjRx6BAgAEAU&url=http://www.myrecipes.com/recipe/lamb-kebabs-with-roasted-peppers&psig=AOvVaw00iV-6yCjcMFvpPns96ZfE&ust=1524799808472259

43

Couscous Patties

Ingredients:

4 cups couscous

4 cups water

8 tablespoons extra virgin olive oil

4 onions

4 clove garlic

2 red capsicums

4 celery stalks

2 tablespoons ground cumin

2 tablespoons ground coriander

8 tablespoons chopped fresh parsley

2 tablespoons lemon juice

4 eggs, beaten

Extra virgin olive oil for cooking

Method: 1. Place couscous in a bowl and cover with 4 cups of boiling water. Leave for 10 minutes until water is absorbed then stir. Set aside. 2. Cut up onion, garlic, capsicum and celery into small pieces. 3. Heat oil in a pan and add onion, garlic, capsicum, celery, cumin and ground coriander. Cook over medium heat until vegetables are soft. 3. Add the vegetable mix to the couscous and add the fresh parsley, lemon juice and eggs. Mix well. 4. Divide the mixture into 16 balls and form into large patties. Cover and refrigerate for 10 minutes. 5. Heat a little olive oil in a pan and cook patties for 5 minutes on each side until brown.

44

Shopping list

Lamb kebabs: double the recipe – serves 8 (makes 16 kebabs)

Items needed On hand

1.2kg lean lamb

2 green capsicums

2 red capsicums

2 red onions

Wholegrain mustard

Mint jelly

Salt reduced soy sauce

Marinading brush

Bamboo skewers

Oil

Chopping board

Knife

Spoons

Bowls

Large flat dish to marinate kebabs in and soak skewers in

Tongs

Cous cous patties: quadruple the recipe – serves 8 (makes 16 patties)


Cous cous

4 onions

Garlic

2 red capsicums

4 celery stalks

Ground cumin

Fresh parsley

Lemon rind

Lemon juice

Eggs

Water

Oil

Ground coriander

Large bowl

Chopping board

Knife

Spoons

Wooden spoon

Spatula

Salad and miscellaneous


Iceberg lettuce

Cherry tomatoes

Cucumber

Red capsicum

Carrot

Tinned corn (no salt added)

Large salad bowl

Tongs

Paper plates

Plastic forks and knives

Serviettes

Serving trays

Alfoil

45

Appendix C: Resource formatting checklist developed by Kraus and Rowe This checklist should be used as a screening tool to improve the effectiveness of resources used at

Nightcliff Renal Unit.

This checklist was developed from patient feedback and the suggestions given in ‘Simply Put: A guide for

creating easy-to-understand materials’ developed by the Centres for Disease control and Prevention’ in 2009.

Message Content

All information provided is important for audience

Relevance of message to audience is explained

Important information given first

Clear, small, practical actions for audience to take are provided

Text

Body text is at least 14pt

Headings are at least 2 points higher than body text

Dark text given on light background (light text on dark background avoided)

Text given in sentence case (all capitals are avoided)

Important information is identified by underline, bold, italics or text boxes

‘Lato’ font must be used if NT logo is to be included

Visuals

All images included are of high quality (sharp resolution, true colour, good composition)

Images are colourful where possible

Images are unbranded (either by design or modification)

All images are instructive (decorative images removed)

Images communicate the message without supporting text

All images are captioned, or positioned close to text they relate to

Source of the images are credited when required

Layout

Information is presented in a logical order to audience

Cover page included for resources more than one page in length

Cover page includes main message and shows who the audience is

Information is chunked using headings and subheadings

Headings are descriptive, clear, concise and positive

Word choice is consistent throughout resources

Minimal text and visuals used per page

Each page has free white space (10-35% of document)

All text and images are aligned on the same horizontal or vertical plane where appropriate

Style of text is conversational

Words are 2 syllables or less where possible

Sentences are no greater than 8-10 words in length

Paragraphs are limited to 3-5 sentences

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Translation

The content and language are culturally appropriate (audience should be engaged in development process)

Visuals are culturally appropriate (audience should be engaged in development process)

Translator used is a native speaker of the intended language (and qualified in translation)

Resource has been translated back to English (by a different translator) to check the tone and content of the message have been preserved

Message should be tested with intended audience

Understandability

Readability of resource tested by validated tool (3rd-5th Grade)

Jargon and technical language have been eliminated if possible

Remaining technical language has been explained

Audience demonstrates ability to derive a contextually relevant meaning from resource (comprehensibility)

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Appendix D: Participant input

Danila Dilba exercise group 04/04/2018

Strengths Weaknesses Recommendations

Get Less Salt

Liked how the resource emphasizes that if you have to go on dialysis it will be ‘for the rest of your life’. This is a big deal!

Dialysis machine does not show end stage renal failure

Kidney and dialysis machine to show end stage renal failure

Kidney does not show end stage renal failure Include another page about kidney function

Lack of information on the actual function of the kidneys and their role in the body

Pathways to dialysis

Show long life to portray that renal disease is not inevitable for everyone if they look after themselves

Include all stages of kidney disease




Get Less Salt

Group liked idea of story board, audio and pictures

Lack of information about alternative choices Use phonetic spelling (ie fosfate)

Group liked the use of speech bubbles (+ images within speech bubbles) when character was talking

Include information about blood pressure

Liked how resource emphasized the importance of family gatherings

Include information about other fluid options other than water (ie water infused with orange)

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Get less Salt

Group was happy that recommendations were taken and liked updates

Group did not appear interested in looking at the amendments – they preferred to look at the new sections

Include a picture of someone doing the dishes inside the kidney (ie kidney cleaning the blood)

Require more information on what the kidney actually does

Asked for more information on diabetes > Make a resource for good food for diabetes and CKD

Need to say ‘kidney is finished’ not just ‘finished’ indicating that the person may not die if they start dialysis

3D element would be good


Include image of different types and lengths of road (arrows). Make sure the different lengths of the arrows are clear



Get Less Salt

Group liked the story overall Limited number of substitute foods to eat that are lower in salt

Change the title from ‘Staying away from salt’ to ‘Get Less Salt’

Rachel and Stephanie did some lovely artwork with the art supplies we brought along

Limited emphasis that Rita never had to have dialysis because she made healthy choices. She stayed away from dialysis and was able to fulfil her family duties

Group members suggested that it might be a good idea to make another similar story with an older character

People should stay away from others who add a lot of salt to their cooking

Add section listing lots of food flavourings which are low salt (pepper, lemon juice etc)

Add section about bush foods and fresh foods (veg, fruit, dairy, meat) that are all low salt options

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Emphasize that Rita was able to stay away from dialysis

Cook up at NRU 27/04/2018


Get Less Salt

Everyone really liked the colourful pictures and that the resources were visual

Most patients thought the salt story was aimed at children – one lady wanted a copy for her grandkids

Suggested using artwork by patients and bush foods as a border around front page to indicate ownership

They liked the quiz where the mother was asking Rita which foods were salty or not salty – it helped them practise their new knowledge

No visual representation of what salt actually does in the body

The word ‘mum’ should be substituted with ‘mother’

The bush foods slide was met with strong enthusiasm! They wanted to add more bush foods: bush chook, oysters, mangrove worm

Per serves explanation page was too confusing

Add dialysis machine

Patients said the red crosses and green ticks were helpful and that they re-inforced the message that was being told

Add 2 minute noodles and noodle cups as other high salt foods

Get rid of salty nuts and pretzels (people don’t eat these as often)

Call it the ‘nutrition information square’ instead of ‘nutrition square’

Get rid of per serves explanation, instead focus only on per 100


People like the traditional living and bush tucker cards

Statistics are not needed to convey the message

Add ceremony poles to the slow track to dialysis to indicate patients are able to fulfil their responsibilities to family and community

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Add a picture of a BGL monitor for high blood sugar and good blood sugar cards. Monitor should be green for good BGL and red for high BGL

Delete some of the statistics

Change ‘Stay away from takeaway foods’ to ‘Eat less takeaway foods’

Change ‘Not moving’ to ‘Sit less’

Change ‘Salty foods’ to ‘Eat less salty foods’



Get Less Salt

Liked the green and red borders to indicate whether foods are healthy (green) or not healthy (red)

Community does not look realistic as there are no trees

Add trees to community

Found most sections easy to understand Text too small Increase text to size 20

Story confusing about when Rita grew up Ensure that pictures and names underneath conform to grid style (neater)

Bread slide was too confusing and people didn’t recognize the brands. It also shows white bread and we should be encouraging multigrain bread

Rename spam to either corned or bully beef

Not enough options that are low salt Indicate that Rita grew up and started to do her own shopping

Delete bread section

Separate bush food and fresh foods slide to indicate more options

Add another section about other low salt foods ie sandwiches, baked beans, rice cakes, pasta etc

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Indicate that Rita was able to stay away from dialysis for the rest of her life due to her healthy lifestyle

Story about foods that make blood sugars high:

Not enough emphasis on dialysis Focus on dialysis numerous times throughout the resource to emphasize the message

Section showing healthy and unhealthy sugar foods on the one page is too crowded and overwhelming

Use ‘faster’ instead of ‘quicker’

People didn’t like the word ‘bits’ – it was too confusing. Use ‘mobs’ or ‘amount’ instead

Add more pictures of sugar, arrow and dialysis to tidal wave section to link message

The pick 1 sugar food slide was too confusing and the message was not well understood

Put healthy and unhealthy sugar foods on separate pages

Not enough suggestions about what other non-sugar food vegetables could be used to fill up plate

Ticks and crosses need to be inside coloured borders (if present) not outside

Add ‘It is good to eat healthy sugar foods but you want to eat the right amount’

Use pictures of multigrain bread as this is available out bush

Instead of saying ‘a good amount is the amount you can fit in your hand like this’ use ‘a good amount is the size of your fist’

Pick one sugar food section use coloured boxes to block out foods to indicate that only 1 food should be eaten

More non-sugar vegetable suggestions ie broccoli, cauliflower and greens

Use sweet potato in place of pumpkin as it is more popular

What do the kidneys do?

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People really liked the summary page as it repeats the message and is easy to understand

Confusing in parts Put a picture of a kidney somewhere on the page

People thought that having red blood cells was too confusing

‘Like the 5 fingers on our hand these are the 5 jobs our kidneys do for our body’

Most pages are far too simple. Add more detail on how these things actually happen

Enlarge the size of the hand

People didn’t really understand the message the resource is trying to give. They thought doing exercise (which is pictured) strengthened the blood and bones

Use blood droplets instead of red blood cells

Number each page 1, 2, 3, 4, 5

To represent the kidney getting rid of extra water from the body use a jug full and then a jug tipping image plus a picture of a person urinating

Show how the kidney cleans the blood



Get Less Salt

People seem to really like this resource, they have said it many times

Some people were confused in regards to tick and cross placement. They thought only the foods next to a tick or cross where healthy or unhealthy

More focus on dialysis would be good to get the message through

People liked the Billy goat/Kakadu plum plant food

Not enough information about why salt is bad ie. eat lots of salt > drink lots of fluid > increase in blood pressure (medical student)

Place ticks and crosses next to each individual food

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Too many different sodium and salt words separately – could be confusing for some people

Use brackets or slashes to lump sodium and salt together so people know they are the same word ie. Sodium/salt or sodium (salt)


People liked the colourful artwork People were not as interested in this resource as the other story resources

Billy goat plum/Kakadu plum was a suitable plant to use

Story about foods that make blood sugars high

People liked this resource alot Some people felt the story was a little bit too long

Insert crosses and ticks next to each individual food

Lots of people like sweet potato so they were happy to see this vegetable feature a few times throughout

The slide with foods spread out through the day was confusing to some people. They didn’t understand the message

Foods spread through the day increase the number of slices of bread on the left to 5 then have less on the right

People understood the pick one food section

Use real photos of people instead of drawings – this would be a good way for patients to participate if they were the models

What do the kidneys do?

A lot of people said they liked this resource because they thought it was important to tell people why their kidneys are important

Some people got confused by the fingers throughout and thought they represented the varying stages of CKD (ie first finger = stage 1)

Get rid of fingers throughout

People liked the cleaning blood and making more blood sections – they thought the message was displayed well

Not enough detail on how the kidneys get rid of extra water from the body (medical student)

Show in greater detail how the kidneys get rid of the extra water in the body

People liked the end summary slide and were able to accurately describe the message of the resource

Some people thought the blood pressure machine was a dialysis machine

Include a section on what will happen if the kidneys are not kept healthy and doing their jobs (dialysis)


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People like the story board Borders on cards are hard to see because they are dotted lines

Make the borders on the cards with a solid line

People like the beautiful and bright artwork – it looks really professional

The wind kept blowing the cards away so it was hard to show to people

Bring blue tack or Velcro to attach to back of cards so the cards don’t blow away

The story board made sense

Jobs of the Kidneys

Jobs of the Kidneys was liked by a lot of people

Still a bit too basic, want to see where blood goes in a rubbish comes out use an animation

Link to kidneys you see when you hunt kangaroos and cut them up

Some confusion about the getting rid of extra water slide, one lady thought the message was that you need to drink water so the kidneys can be flushed out

Some changes to the wording so it is easier for people to understand the message

Change ‘The kidneys clean the blood to get rid of rubbish’ to ‘The kidneys strain the blood to get rid of the rubbish and keep the good blood in the body’

Change ‘Clean blood is important so you can stay healthy and strong’ to ‘Need to keep the blood clean so you can stay healthy and strong’

Lightbulb vs. wrinkled kidneys

People loved the analogy and seemed to understand it well. It was well received

Only the lightbulb kidneys were shown

It gave one lady ownership as she had brought along a resource for me to look at with a similar idea in it

Work of the kidneys video by Dr Jaqui

Some people thought the video went for the right amount of time

Some people thought the video went for too long

Use ‘piss’ instead of ‘urine’

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People understood that having healthy kidneys is important to stay away from dialysis

Some people thought that the video would be too technical especially for countrymen out bush; they worried they wouldn’t understand the message

It would be a good idea to play the video in waiting areas of clinics and dialysis centres

Use simpler terminology to explain things in layman’s terms

Patients around NRU 22/05/2018 - Impact evaluation


Get Less Salt

People thought the story was very helpful (especially for people living out in the communities and kids)

Characters are too basic Give people a hard copy of the story to take home so they can read it later and also so they can show their family

Like the pictures because they are bright and colourful

A lot of people got confused. They could not answer the resource impact evaluation questions correctly

Put the story into language – it will be useful for the older people who can’t speak English very well. But some words would not be able to be translated. Recommends Kriol

Like the idea of dividing the original Get Less Salt story into two separate resources

Add clothes to characters. Make Rita prettier

Could narrate the story using different people’s voices to make the story realistic. Could use one older lady’s voice and one girl’s voice to indicate the age of the characters




People had a good understanding of the main message

None mentioned None mentioned

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The resource was met with strong enthusiasm of all who watched it




Participants distracted – limited feedback obtained at this session. Stayed for a shorter amount of time intentionally in order to make speaking to NRU patients a priority



Get Less Salt – Salt Swaps

People had a good understanding of the main message

Characters are too basic Share the story with remote clinics

The story is very good. Some people might even go and tell their family which is good

Put the story on ARDS (Yolngu radio) so people can listen to it

It is good that bush foods (‘our food’) is included in the story

Get different people to narrate the different character’s parts of the story

Translate into language Yolngu Martha or Dhuwa

Add facial expressions to the characters

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Appendix E: Piloting of resources around NRU (and impact evaluation)

22/05/2018 – Impact evaluation of Get Less Salt

Questions:

1. Did people get the questions right?

a. 0 right out of 2

b. 1 right out of 2

c. 2 right

2. What are 3 foods that don’t have much salt in them?

3. What are 3 foods that have a lot of salt in them?

4. Why is it important to stay away from salt and salty foods?

Patient 1:

1. a – did not get any questions right the first time but when the less than 400 sodium concept

was explained again she understood and got both right

2. Cabbage, lettuce, carrots, pumpkin

3. Did not know

4. Stay away from salty foods to keep your body healthy

Patient 2:

1. b

2. Bush foods

3. Did not ask questions

4. Stay away from salt. Watch what you eat because you might be eating too much of it. Look

at the nutrition information to see how much salt you are eating.

Patient 3:

1. Did not ask her the NIP questions because she couldn’t see properly (did not have her

glasses with her)

2. Spices, garlic

3. Chips, salty plums, hot chips

4. Look after your kidneys and your health so you don’t have to have dialysis in future like me.

Once you go on to dialysis it is for the rest of your life so eat the right foods!

Jody (ALO):

1. c

2. Sandwich, tinned tuna and fish

3. Pie, tomato sauce, soy sauce

4. Your kidneys stay stronger for longer if you stay away from salt

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23/05/2018 – Impact evaluation of What do the kidneys do?

Questions:

1. What do you think this story trying to tell you?

2. Why do we need to keep our kidneys healthy?

3. What happens if the kidneys get sick?

Patient 4, 5, and 6:

1. You need to make sure that you keep the kidneys healthy. When your kidneys are healthy

you will stay strong

2. So the body can stay strong

3. You will have to go on dialysis

Patient 7:

1. The story tells us what the kidney does in our body

2. The kidneys can throw the rubbish away and clean the blood when they are healthy

3. The kidneys can’t do what they are meant to do

Patient 8:

1. Healthy kidneys are important. The kidneys work hard in your body. If your kidneys don’t

work dialysis will clean your blood instead

2. Your bones stay strong when your kidneys are strong

3. When the kidneys get sick they are weak and don’t work properly. You might need dialysis

Patient 9:

1. Very interested in watching the video but there was not enough time for feedback because

she had to go to her chair to receive dialysis

24/05/2018 – Impact evaluation of Get Less Salt – Salt swaps

Questions:

1. What do you think this story is trying to tell you?

Patient 10:

1. This story is telling us about salt. It tells us that salt is hidden in foods and also on top of

food if you put it on there. Foods that are bought in the shop and takeaway foods have a lot

of salt. Bush food doesn’t have much salt, it is very good for you so eat it more.

Patient 11:

1. It is telling people about salt and this it is not good for the kidneys. Salty food is not good for

the kidneys

Patient 12:

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1. Lots of foods have salt in them. A lot of foods have hidden salt so you have to be careful

about what you eat. You can’t see the salt but it is still there. Stay away from foods with

hidden salt as much as you can because it is better for your kidneys. When you eat a lot of

salt you might need dialysis

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